If only I’d known

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When I was suffering from depression I did a fair bit of looking around for information and was surprised about how much information I found myself, information that wasn’t given to me by healthcare professionals. I decided I wanted to share this information with other people. I also decided to ask others about their experiences. I also found a lot of information on how to work out if you are depressed but very little on how to live with this (and other kinds of mental illnesses) on a day-to-day basis. Below are the answers and opinions from various people I know. I hope it might help others.

Carmen
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Question 1
What kind/s of mental illness have you experienced? (For example, depression/anxiety/psychosis/bipolar/postnatal depression/etc)
Question 2
What kind of things help/ed you cope with this?
Question 3
Is there anything useful you know now that you wish someone had told you earlier, (especially things a healthcare worker could/should have told you)?
Question 4
Do you have any horror stories about your treatment from healthcare workers/colleagues/friends/family because of your illness?
Question 5
Do you have any suggestions for a soundtrack for this zine?
Question 6
Anything else you’d like to add?
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Carmen

1 depression

2 Being aware of what makes me happy and what doesn’t. Being aware of what I want out of life. Being aware of how my thought processes contribute to my depression (twenty years of thinking you’re no good can be a REALLY hard habit to break).

Having supportive friends around you. Avoiding people or situations that aren’t supportive of your situation and your needs.

3 If an antidepressant doesn’t work within 5-6 weeks, it’s probably not going to work for you. I spent five months on a drug that did nothing for me other than make me need to sleep for twelve hours a day. If I’d had a decent doctor, that five months could have been shortened considerably.

When someone starts taking antidepressants, they should be monitored closely (your doctor should get you to come back at least weekly). Some drugs can make you worse! One of the antidepressants I took increased the severity of my depression like I couldn’t believe. I have read that most studies of antidepressants always seem to have a small minority of people that the drug makes worse! I think doctors should know this and watch for it (but unfortunately they often don’t). If your drugs are making you worse, see a doctor and get off them. Unfortunately it seems that the drug companies don’t want us to know their drugs can make people kill themselves. The companies claim that we don’t know whether those people would have killed themselves anyway. But I know my illness. I was (very briefly) suicidal in grade 12. For the following eight or nine years I would get regularly depressed but I was never suicidal until I was on a certain anti-depressant. When I started taking it, all I could think about was killing myself, or hurting myself.

I found out a lot of stuff by searching on the internet and getting books from my local library. No one actually knows why we get depressed or how antidepressants work – it’s all guesswork and theories, so read a lot and see which one seems relevant to you and your situation.

4 Apart from the usual having friends/partners/family/etc who don’t understand what you’re going through and think you should just pull yourself out of it, it also took me a long time to get appropriate help. I had tried though. Not long after I first left home, when I was seventeen, I went to a doctor at the uni health service about feeling depressed. She asked if I was having trouble sleeping – no. She asked if I was having trouble eating – no. I can’t remember what else she asked but she sent me to the counsellors at uni and the guy there told me things like ‘Look in the mirror and say “I like myself”.’ Now, I didn’t like myself and when I tried such things I felt stupid and the whole affair actually made me feel worse about myself so I vowed that I would never again seek help for my depression. I figured I’d dealt with it on my own in the past and I could deal with it on my own in the future. Luckily for me I broke this vow years later when I was drinking way too much and was really depressed and needed to get help.

I also saw a doctor once (this was a few years later) who had never seen me before and he gave me antidepressants (with a repeat for four more prescriptions) and told me to come back in two weeks. This was the situation where I was on a useless drug for five months. This doctor also referred me to a mental health clinic nearby. I psyched myself up to go there and then when I did, they said they don’t do counselling there. So it felt like another dead-end. My advice is keep trying to get help, even when it is really really hard. I remember looking up GP’s in the phone book, calling to make an appointment and finding they didn’t bulk bill (bulk billing means it is free if you have a medicare card) and it would cost me $45 to see them. I got off the phone and cried and cried. It was just too hard.

One of my other favourite “bad stories” is how people who are supposed to be close to me have done things like tell me off for having low self-esteem. That kind of thing DOES NOT HELP!!!

6 Don’t ever forget that you are not alone.

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Anon

1 Schizophrenia, depression

2 The right medication. Reality checks e.g. telling someone I trust about what’s going on in my head, voices, etc and being assured that it’s not real.

3 I still don’t know the answer to this but would like to know…

How long will I have to take medication?

Will I have schizophrenia for life?

4 I’m not sure if this is quite a horror story or not, but one of the worst experiences I’d had was having ECT (electro convulsive treatment) where they put you to sleep and then make you have seizures. It was a horrible experience and has left a lot of blanks in my memory.

5 “Blow Away” by George Harrison

Sam

1 I was a teenager when I first saw my mother have a panic attack, an uncontrollable shaking fit on the kitchen floor. I thought she was dying so I called an ambulance. Now I have the same anxiety disorder as my mother. It has only begun to manifest in the past two years, appearing in the form of panic attacks and generally twisting myself into knots over things that never used to worry me.

2 My experience with antidepressants was a nightmare so I never use them anymore. (See below for my favourite antidepressant horror story!). I hate the way antidepressants make me feel like a zombie – suppressing my sense of humour and, more importantly, my sex drive! I’m a big fan of my sex drive! For me, antidepressants were a Catch 22. They did relax me but not in a way that improved my quality of life. Besides, I’m not depressed, I’m anxious.

I had to do two things to really make a difference: I made the very difficult decision to quit my extremely stressful job as a magazine editor in China, which I loved, and I had to join a very quiet, posh gym to escape the fast pace of urban Shanghai life. I have now balanced my life between part-time work and living a healthy lifestyle. I quit smoking and drinking alcohol (apart from the occasional glass of wine) and I also relax in my women’s only spa and do yoga. With these changes I’m learning to control my anxiety. I realize being a member of a spa is a luxury that is not available to a lot of women, but I only do it because I live in a big Asian city. If I lived in Australia I would do other things like play sport, swim or go bushwalking…

It is also important the people around you are supportive. When I feel a serious panic attack coming on, I call my fiancée straight away and usually he can talk me out of it or will come and take me out of the situation that triggered it.

3 Medical professionals do not understand antidepressants as well as I would expect them to understand a chemical that alters my brain and moods. Don’t assume antidepressants are a miracle cure. For some people they are, but for others, like me, there are other ways to control anxiety. I needed to take a holistic approach.

Because I live overseas and travel a lot, I didn’t have a GP or family doctor who knew my medical history well. Because of this, a lot of valuable clues that would have led to an early diagnosis were missed. Whatever you do, make sure your GP is thorough. Also, if you have something that will take a long time to discuss, help GPs do their job by booking more time with them than a usual fifteen minute appointment. It’s more expensive but worth it in the long term because you have their attention. It was during a one hour physical that all my problems unfolded to a thorough GP!

4 Recently I had a medical condition that made me so afraid I whipped myself into a panic attack. Some of the doctors (Western-trained but practicing in China) tried to treat my anxiety with Peroxitine and Diasapan. I had a horrible reaction to them both (a sensation of burning, nausea, diahorrea, and frozen joints like I was having a fit). I ended up in hospital and felt like I was getting sicker and sicker because of the cocktail of drugs they put me on. In the end I came home to Australia. My neurologist here said “I’m surprised they gave you Peroxitine. I never prescribe it anymore because it’s known to be a bit rough.” She took me off all the drugs except for Panadol for my withdrawal headache (I became addicted to the painkillers)!

Also, a few years ago I was diagnosed with premenstrual dysphoria (severe depression caused by hormonal changes leading up to my period). But I found out last year that it was actually an iron deficiency that made me feel sick, achy and therefore unhappy. Now my anaemia is sorted I’m very happy, albeit anxious! With regards to the anaemia that was misdiagnosed as premenstrual dysphoria… This would have been picked up earlier by a thorough GP who knew me well.

Ngaio

1 Depression and Anxiety

2 Medication initially (cipramil), good music, keeping busy, exercising if I get the time.

3 The fact that my medication had the side-affects of weight gain and lethargic feelings, which is what has made me feel very depressed after my initial depression bout. I would like to have more information to give to my friends and family about how to help, and for them to understand it better.

5 The Unicorns – I was born a unicorn

Le Tigre – TKO

Beck – Midnite Vultures album

6 Trying to do something you have always wanted to do (i.e. singing lessons etc) if you have the confidence to begin, helps you immensely.

MAX452

1 Depression, social anxiety disorder, anxiety/stress due to school work/assessment

2 Drugs, drugs and more drugs, talking to other people and doctors, expressing myself in my journal and my artworks.

3 Not really, everything was pretty much explained as it unfolded for me, I’m talking over the last 9-10 years

4 Only really happens when I tell people who don’t know much about it/friends who try and ignore that you have just explained what you suffer from. They don’t know how to respond/what to say

5 Add list of songs!

James

1 Severe depression, social anxiety

2 Therapy, walking, isolation – quiet times out,

3 That it’s a long, slow process and I wonder if I’ll ever be rid of periods of depression.

4 A lack of understanding by friends who think you should just get over it, and get on with life.

5 Man on the Moon by R.E.M and We Walk the Same Line by Everything But The Girl

Hope

1 Depression, obsessive compulsive disorder, post traumatic stress

2 Going to counselling at Centacare when I was 17 until I was 25. reading The Courage to Heal. Having an incredibly supportive sister and close friends. Talking about and implementing systems developed with my counsellor to cope with daily life.

3 Depression is a mental illness that can be managed, there are many different types of depression and it does not mean you are going crazy.

Counselling does help and the more you talk about mental illness with your friends and family the more they will understand, it’s not something to hide.

4 I get a shock when I hear how many people turn to drugs first and foremost to deal with their depression, when I firmly believe there are emotional reasons that should be dealt with first, unless of course your depression is a result of brain injury or another mental illness. GPs often are not the best person to speak to about depression, even though they may validate your condition and might be great for first contact, they most likely will not help you get to the bottom of it, preferring to just prescribe drugs, which I think can mask the real reason for depression.

All my friends were really understanding, but it’s really hard for partners to cope without their own support network and it can lead to relationship breakups, which was the case with me repeatedly, until I figured it out. Also my parents found it hard to understand mental illness and I think that’s a generational thing.

5 I listened to ‘One for the Ride’ by Waxwing repeatedly and it helped A LOT!

6 Counselling is hard work, it’s not a quick fix but if you really want to get to the bottom of recurring depression it’s the BEST especially if you find a really suitable counsellor, which may take a few tries. The best thing about counselling is that you work on things in your own time, you can get your family to come along and have a counsellor explain things to your friends and family, you can come up with solid strategies to defeat depression when it crops up or manage it when it takes over. You have validation of your condition, you have a person to turn to when crisis hits who really understands. It’s way cheaper than a private psychiatrist and you can get fee-relief if you’re a low income earner or student. It’s scary at first but completely worth it and nowhere near as scary as the mental health unit at your local hospital.

I recommend Centacare (07 3252 4371 [in Brisbane, Queensland, Australia]) especially if you suspect your depression is related to relationships, sexual abuse, assault or family problems. It took me eight years, but right now I consider myself happy, and that’s the best you can get.

Bonnie

1 Bipolar disorder.

2 Accepting that I have bipolar disorder. I have had a hard time dealing with this, telling myself I had no illness, and that I was a privileged westerner with nothing to complain about, and that I just had to get back on track.

Recognizing when I’m not feeling well and taking time out, to sleep, to relax, to make art, to recover, not taking on too much. Not watching the news, avoid any footage of John Howard and George Bush.

3 Medication does not work for all people. It’s ok to feel sad or crazy because really, it’s a sad and crazy world.

4 Lack of support and community funding for mental illness, not being able to get help or afford treatment (working class chip on shoulder surfacing now). The band-aid healing approach of the limited services offered. You can get immediate help if in psychosis. This is a really detrimental way of dealing with mental illness, dealing with the extremities and not the everyday coping mechanisms. It also confirms stereotypes of “mad or crazy people” and that you don’t have mental illness if you are not in psychosis.

I have found that family and some friends are basically uneducated on mental illness. Stereotypes of the condition, “she is just lazy, attention-seeking”, are really hurtful and unhelpful when you are trying to come to terms with mental illness. The frustration of trying to explain the nature of the illness to them, which was hard enough to get my own head around, and very personal. Trying 4 different medications, including lithium and reacting very badly to them all.

5 To laugh – All Ween, gene and dean, you saved my life.

To cry – Cat Power, thank the gods someone feels like I do.

Not Bobby Mcferrin, Don’t Worry Be Happy.

Anon2

1 Officially diagnosed with anxiety depression but when I first went into hospital they said I was a bit psychotic.

2 There are so many things. The most important one is patience and commitment towards healing. And there’s so many little things and ideas you learn about how to improve and sometimes you get it wrong but at the end of the day it’s perseverance that gets you through. It’s a commitment for the rest of your life. You won’t just heal and then it will stop. It’s constant. It’s not a one off fix, there are so many little things.

3 Psychiatrists are not necessarily helpful and in my experience counsellors are much more useful.

4 When I was hospitalised (for being psychotic) there was a nurse to “welcome” me and one of the first things she said to me (keeping in mind they didn’t know where I was at) was to ask if the staff-member-in-training could join in on the conversation.

I got admitted in late afternoon and they just left me there and I wasn’t seen by a psychiatrist until the next day.

It [the treatment of patients] is so cold, so cold in psychiatric institutions. It’s just so fucked up. I can’t believe how fucked up it is.

They have been studying this stuff for more than the last two hundred years. Why haven’t they worked this out?

I find that with all psychiatrists there is this huge-arse filter between the two of you where they’re perceiving you or analyzing you through this pre-conceived framework that they must have got from their elitist med school.